Celebrities Getting Cool As Ice

Bill Gates dunked himself in ice water to raise awareness and donations for amyotrophic lateral sclerosis research; Mark Zuckerberg did too. LeBron James accepted the ALS Ice Bucket Challenge from the deck of a yacht in Greece.

Justin Bieber took the challenge — twice.

Thanks to the hundreds of celebrity videos, and the million-plus less well-known ones, the ALS Ice Bucket Challenge has helped raise more than $15 million in donations, the ALS Association said on Monday.

And given the challenge’s momentum, millions of dollars are likely still to come. Now comes the hard part: Where will the dollars go — and how will they change ALS research?

“This amount of money … it opens up new opportunities that were previously unfathomable,” said Carrie Munk, the spokesperson for the ALS Association.

The Challenge Facing ALS

Advocates for nearly every disease have to fight for dollars and awareness. But when it comes to deserving causes, ALS might be on the short list.

The disease is terrifying and unyielding. Motor neurons die off, leading to the loss of voluntary movement; within weeks, muscles begin to waste away.

There’s essentially no treatment: the lone drug approved to treat ALS, riluzole, slows the symptoms by only a few months.

It’s like Parkinson’s on super-steroids. Patients end up trapped in their bodies, dependent on technology to keep them breathing and communicating.

ALS is a “glass coffin,” Ron Schaffer, an ALS patient who relies on an iPad speech app, told the Charlotte Observer. The typical prognosis is 3 to 5 years.

But ALS is technically an “orphan disease” — it afflicts about 30,000 Americans, or about 2 in 100,000 people. That means there’s little incentive for pharmaceutical companies to pour billions into R&D and pursue the market.

How the Ice Bucket Challenge changed the game

The ALS Ice Bucket Challenge, sparked by patient Pete Frates, caught on with Boston-area athletes and spread rapidly across the past few weeks. It relies on a simple dare: You have 24 hours to videotape yourself being drenched by a bucket of ice water, or donate $100 to ALS research. Then keep the cycle going by daring others to do the same thing.

For a sense of scale, a similar “cold water challenge” to raise breast cancer awareness earlier this summer also caught on with some athletes and media, and accumulated about 142,000 retweets after 20 days. The challenge brings a few health risks: at least a few do-gooders said they’ve suffered concussions from stray chunks of ice.

And there’s been a backlash about the challenge’s perceived “slacktivism” — that if people really wanted to make a difference and not make a spectacle, they could just donate the money straight to the association. But the challenge’s success, whether due to narcissism, its goofy nature, or grassroots appeal, is inarguable.

The ALS Association and its chapters collectively raised about $64 million last year. But in the past three weeks, the organization has seen more than a 1100% increase in year-over-year donations — all attributable to the challenge.